Wednesday, July 2, 2008

I Like to Eat........ well almost!

I'm blogging this for Janice to whom I owe a HUGE thank you to! Jake put together the high chair that Janice bought for Nathan when she came out when he was born. What I love about it is that I can keep him distracted and he seems to forget that something is going in his mouth! He will take 8-9 teensy tiny bites (probably equal to 2-3 normal baby sized spoon fulls), but that is progress. We're finding that he doesn't mind food necessarily, its the swallowing that he is really struggling with. We're glad that Dr. Sidiqqi (the plastic surgeon) is on our up and coming appointment list. We're seeing him on the 15th of July to have Nathan's cleft reassessed and to hopefully set a date for the next surgery. I'm really going to push having Dr. Albert Park place tubes at the same time in his ears so as to eliminate another seperate surgery. Jake and I are hoping that when Nathan's cleft is temporarily repaired that Nathan won't struggle so much with getting food down and will start taking larger portions. The ultimate goal is getting rid of that button! So thank you Janice for giving us such a great present to work with Nathan on his feeding skills. You're the greatest!

CHD Awareness

1 in every 120 babies are born with a heart defect. What if that ONE was YOURS?

Our Little Man

We unknowingly became elite members of a world no one wants to be a part of on January 22, 2008 with the birth of our little boy, Nathan, but looking back we can't imagine life any differently. Nathan has had to endure 21 surgeries in the first 25 months of his life including open heart surgery for Tetralogy of Fallot, jaw surgery at 3 days old, 5 cleft surgeries and many surgeries involving his airway, ears, and eyes. He has a g-tube which he uses as his sole source of nutrition. In February 2010 he underwent a second jaw distraction as he was showing signs of right heart failure.

Nathan is our little hero; our witness that prayers are answered individually and that we couldn't be blessed with better family and friends to support us.

A Heart Mother's Poem

One day my world came crashing down,I'll never be the same.They told me that my baby was sick.I thought, "Am I to blame"?I don't think I can handle this.I am really not that strong.It seemed my heart was breaking.I have loved him for so long.I will not give up on this child.I will listen to your advice.I will give my son any chance.No matter what the price.I will learn all that I needTo help my baby thrive.I'll even use that feeding tube.My child must survive!Will he need a lot of therapy?Will he gain the needed weight?Please God, help me do this.As I accept our fate.When the monitors beep at night,it serves as my reminder.How many parents would love that sound.Tomorrow I will be kinder.As another Angel earns his wings,I run to my baby's bed.I watch him sleep for quite a while.I bend down and kiss his head.I cry for the parents whose hearts have been broken.I look to You wondering why?Oh Lord, I just can't know your ways....no matter how I try.And yet, I trust you hold his life,and guide us through each day.My mind says savor each moment he's here,but my heart begs, "PLEASE let him stay"!From pacing the surgical waiting room,to sitting by his bed.From wishing for a good nights sleep,to learning every med.From wondering, "Will he be alright?",to watching him reach out his hands.With every smile my heart just melts,despite life's harsh demands.For all who see that faded line.I look to them and smile.You see my child is loved so much.I would face ANY trial.That scar I trace with my finger(It's the door to his beautiful heart).God must have known how much I'd love him(Just as He loved him from the start).A heart mom is always a heart mom.Now wise beyond her years.For those who have angels in heaven,Our hearts share in all of your tears.Every day I will try and remember,I was chosen for him (and no other).I will always embrace that beautiful day.......When I became a "Heart Mother".~Stephanie HustedMommy to Braeden HLHS post FontanCarepage name: babyhusted

HEART POEM

I "borrowed" this poem off of another blog. I'm not sure who the author is, but it truly touched my heart.(Original version found at http://garyandcamille.blogspot.com Thank you!)Heart Poem:

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."